Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

Scleroderma and fatigue/tiredness


  • Please log in to reply
6 replies to this topic

#1 Kamlesh

Kamlesh

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 315 posts
  • Location:Dublin, CA

Posted 11 September 2009 - 11:54 AM

All,

Have been blessed to have my Scleroderma in remission. I have continued to increase my physical activities besides having a full time job. I am off Cellcept for two years now. My DLCO has jumped from 46% in April 2005 to 73% now. My acid reflux is under control – Demeestar score reduced from 84 to 22 (normal below 14) after surgery.

It looks like I feel tired and exhausted with increased physical activities. My normal routine is to start day with breathing exercises, yoga (sometimes 10 to 30 minutes around five days a week), take a two mile walk during lunch time.

Couple of weeks ago, I stretched further tried walking 3-5 miles a day and did it for 5 days and I was completely exhausted for next one week and slowed down.

This week again started my routine, but I feel tired and fatigued.

I am not complaining, but looking for suggestions how to overcome fatigue and tiredness.
Kind regards,

Kamlesh


#2 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,275 posts
  • Location:Minnesota

Posted 11 September 2009 - 01:37 PM

Hi Kamlesh,

Just because you've made a ton of amazing progress in dealing with scleroderma, doesn't mean you are cured of it, of course. It seems to me like doubling (or more!) your walk all at once was way, way too much.

Perhaps you'd like to consider backing off to a gentler pace for a few weeks (maybe mosey one or two miles), and then increase your walk by just a block or two each week. Ease your way into it, and then you'll know at exactly what point enough is enough.

Congratulations on all of your very hard-won achievements. If you just ease off a bit until the fatigue lets up its grip, and then increase gently from there, you should be back to a pace that you can maintain.

And if you can "only" do a two mile walk every day, you will still be far ahead of many people and your consistency will matter more than your distance.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 12 September 2009 - 05:22 AM

Kamlesh
First of all - CONGRATULATIONS on the huge progress you have made in battling this disease. Your jump in your DLCO is incredible and your exercise routine is quite admirable. However, I have to agree with Shelley that you might be trying to do too much too fast. Remember that exercise helps to build the immune system. Since our systems work backwards, when you stress the immune system it can do more damage than good. Therefore, as Shelley suggested, slowly work up to what your body can handle. If you get too fatigued, then you're doing too much. Like you, I have found that exercise is one of the best things to do to battle this disease, especially the fatigue symptom. However, I have also discovered, as you have, that when I try to push myself to hard, I pay for it. So listen to your body and if the exercise is making you more tired, then cut back.

Again, Congratulations on your marvelous progress. You are definitely an inspiration!

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#4 Deb1million

Deb1million

    Silver Member

  • Members
  • PipPipPipPip
  • 108 posts
  • Location:Maldon, Essex, UK

Posted 12 September 2009 - 11:03 AM

Hello Kamlesh,

Well done for achieving such good results. I only dream of being able to return to that level of former fitness.
Please can you tell me how long you were on Cellcept? And did you have many symptoms at the start of your treatment? I'm on Cellcept, and I'm beginning to feel better.

Thanks,

Debs B

#5 Kamlesh

Kamlesh

    Senior Silver Member

  • Topic Starter
  • Members
  • PipPipPipPipPip
  • 315 posts
  • Location:Dublin, CA

Posted 13 September 2009 - 01:34 PM

Hi Debs,

I was 3000 mg for two years and 1500 mg for 6 months and was asked to stop completely as WBC was dropping so much.


Kind regards,

Kamlesh


#6 Kamlesh

Kamlesh

    Senior Silver Member

  • Topic Starter
  • Members
  • PipPipPipPipPip
  • 315 posts
  • Location:Dublin, CA

Posted 13 September 2009 - 05:49 PM

I had an echogram couple of years earlier and was negative.

Couple of weeks ago, I had a CT scan and no changes since last year.
Kind regards,

Kamlesh


#7 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 14 September 2009 - 06:58 AM

Hello Kamlesh

Your progress is amazing as others have already said. It's always a temptation to do as much as possible when we feel well but we need balance as doing too much always has to be paid for. As well as you are doing you still have scleroderma and although it may become quieter over time it never shuts up completely, at present it may well be telling you you're doing to much too soon. That you want to continuously challenge yourself is marvellous just make it slow and steady, I know fatigue can get better but it is unfortunately always lurking in the background however well we may feel.

Take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)